Ok, so I am surviving the lonely week and some, so far! Brian is out of town for work and Luke is at his father's until Wed. Got to see him for a bit this morning when we went to church. Apparently his father would spontaneously combust if he were to bring him, so he dropped him here to go and then Luke went back this afternoon. So it's back to Sammy and I all alone....very weird sleeping alone after all this time.... I think Sam is getting sick of me already and the summer just started! ;) (He's thinking..."mom, would you give up on the nap idea, already!!" ) :)
Unfortunately, we will not be in the house until like Aug. 1st. I know, could the deadline change anymore?! Brian is losing 8 or 9 days being away, so that doesn't help at all! I am still packing things here and there, anyway, so that I don't have to be overwhelmed at the last minute. Poor Luke has had his room almost all packed for weeks now! Sammy, too! I guess I just got too impatient! :) Does that hint to me that it's stuff that they can live without?? Actually I'm proud of myself...I threw a lot of stuff away and gave lots of things away to friends and the kids at school. I also made a tag sale box, so we have really narrowed down the boys' things to the basics. I also went through my clothes and gave bags of stuff to charity and tossed out the out-dated stuff. I guess I'll have to buy more now, since I will have a nice big closet all to myself at the new house!! LOL :)
So Sammy is on 3mg of Baclofen now. We have seen some loss of head control and some increased drooling, but I am not seeing any major setbacks, which is good I guess. He can turn his head a little easier to the left now, which was always an issue before. He is now sleeping through the night consistently. Not sure if it's the Baclofen, but that seems like an awfully big coincidence if it isn't! I am enjoying that part! :) Our PT said that she noticed a difference in his stretching, but then she was the one who pushed for the stuff to begin with, so I don't take her word for it when I am not seeing a big difference at all. At times, when he's relaxed, his legs seem more pliable, but the tone is definitely still an issue with his function. He has some better function with his hands, but not much more. He is starting to walk without scissoring as much, when we hold him up, when he slows down and takes his time with it, and doesn't try to win a sprint race! ;) That is a big thing! Overall, not seeing a huge difference, but we will stick with it and see if he needs or can go up with the dose from here. He is really tolerating the med well in terms of not having much for side effects. He is silly as ever and doesn't seem sedated by it at all, as that can happen with bigger doses. So we are thankful for what we have been blessed with so far and I continue to pray and ask for your prayers that he continues to make progress and that we all have strength to get through each day!
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Followers
God Chooses A Mom for A Disabled Childby Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
About Me
- ellen :)
- MA
- I'm a wife of 8 years, a mom of 2 gorgeous boys, one who has CP, and a lover of turtles! :)
2 comments:
We will also continue to pray for Sammy's progress. It sounded like a good update overall. Good luck surviving without the big boys. I hate when Joe has to work out of town but some ladies are happy to be rid of their pesky hubbies for work.
thanks,Dawn! :) We will take all the prayers we can get!
At first, I was ok with Brian being gone, but it's too quiet at night without both of them here. :(
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